Monday, 19 May 2014

Why Cameron is No Ordinary Kid - Part 54

This was the first day of my new life and from here on I can't retell our story day by day because my memory isn't that good so instead we will leap all over the place from memory to memory. I'm also aware that some memories and periods of time are well and truly buried but this process may bring them back to me. I will try and follow a generalized time line but I know I will remember things out of order,

The next month was busy. Plans were falling into place for us to move into a more permanent home in the city. I had to gather everything we needed to survive without our belongings until then and we started the never ending cycle of therapy and hospital appointments.

Thankfully I had my car and that was one thing that made life feel normal. I had Cameron's car seat and his pram and while we were in the car or using the pram life was just a little bit normal. My car became my safe place and consequently I shed a lot of tears, screamed, shouted, pondered and puzzled over life in my car. I wasn't the only person who cried in that car, Cameron did too.

Cameron cried a lot for the next 12 months. He cried in the morning, he cried at night, he cried during the day and there was little I could do to stop him. Comforting cuddles didn't work, feeding didn't work, driving, walking, rolling, didn't work. Other people doing all the above didn't work - nothing worked. Cameron just cried. I know why now but at the time I had no idea why he cried so much and it made people move away from us, glare at us and complain loud enough so we could hear them.

I would sit in the airport waiting for Michael to arrive home at the end of each week and everyone would stand up and move away, some glaring as they went. We would walk through the supermarket and we would hear people complaining about our upset child. Occasionally I wished I was brave enough to walk over to the people complaining about my poor parenting in loud whispers and hand them my child saying - if you can make him stop crying please do because my head hurts and I'm exhausted by it.

I would drive home between appointments from the hospital because there was nowhere I could go that his crying wouldn't upset other people. The comfort of my car was much better. But the car didn't stop him crying and sometimes I would turn the radio up in desperation to drown out the noise but that never worked. It was the type of noise that rattled your brain. Sometimes I would join him because I was so exhausted and desperate and there were some really bad days when I would contemplate driving into a tree or a wall so the noise would just stop.

The nights were the worst, he seemed to have a sixth sense and whether the house was in darkness or not, the minute my head hit the pillow he would start crying. It was particularly hard while we were staying with Michael's parents because I was so aware that he was disturbing them and so there I sat night after night rocking him and trying to calm him all by myself in the dark. It was a lonely time even though I was surrounded by people.

Now I know why he cried but I wish I had known at the time. Adults report that after having Meningitis they suffer terrible headaches. He was in excruciating pain and all he could do was cry. I instinctively gave him Panadol because he seemed to be in pain and I knew that it would start to help 20 minutes after I gave it to him but it didn't always last until I could give him a new dose. I often joke that I should have bought shares in Panadol because I bought enough of the stuff and never left home without it.

An adult described the headache to me and I was shocked. She would curl up in the foetus position for hours, scream at people, punch walls, she couldn't tolerate light and punched in a few doors trying to relieve the pain in her head. She also told me that on her way to the hospital before she was diagnosed with Meningitis she almost kicked the front window out trying to stop the pain. She was a tiny sweet natured girl who was very scarred by her experience with Meningitis. Just imagine that pain in a baby's head and no way of understanding it.

There was one day that I will never forget because it was the only time we were in a group of people who understood  totally. We attended our first gathering of The Meningitis Centre and as we met these strangers Cameron started to cry in his usual very loud way. We started to feel uncomfortable because he was so loud but the other parents immediately rallied around us assuring us that they understood and actually took Cameron off to another room to give us a break. They had been through it themselves. We immediately felt a part of this group and so grateful for their understanding and assistance.

Since that year whenever I hear a baby inconsolably crying in a supermarket I immediately feel sorry for the parents and wonder if there is a greater reason why their baby is so upset. I hate the thought that their baby is in the kind of pain our baby was.

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